Anyone had burning tongue/mouth syndrome? Can you please share your experiences?

[CasaBevron]

I'm trying to get to the bottom of a weird set of symptoms that I have been experiencing for the last couple of weeks. They have intensified this week, and from looking around for info, I think this is what I have.

If you have suffered with burning tongue syndrome, can I ask a few questions?

• Did it affect just your mouth/tongue or did you also feel it in your face?
• Did certain foods trigger a worsening of the symptoms?
• what sort of symptoms did you experience? What did they feel like?

Thanks, I am trying not to give too many details of what I am experiencing as I would like to hear your unbiased accounts!

Please help me get to the bottom of this!

TIA

Does all food also taste absolutely disgusting? To the point where you don't want to eat?

Anyway - yes, I've had burning mouth (particularly tongue, not face at all). Loads of people had it at the same time, and I asked my dentist: he said primary herpetic infection. To which I went but he meant first time being infected with a new coldsore-type virus. I cannot explain how loads of my friends also got it

No, its more of a strange taste in my mouth after eating. Did you find that any foods caused it to become more painful or to feel different?

Have been to the doc and am taking aciclovir. It's actually worsened since I started taking it!

I found that anything dairy-based tasted so awful I couldn't continue eating it. I can't describe it - sort of cloying and sour at the same time? But all food tasted quite rank tbh.

I don't know about this manifestation of the virus, but I think when you have a coldsore you have to take acyclovir right at the start so it can bugger up the virus in some way. It might have taken hold already iyswim. It lasted iirc about a week or 10 days in our cases.

Thanks guys. Been discussing it with dp and he thinks i'm reacting to the aciclovir. I started on it monday evening and have been having odd symptoms since. Monday evening my face felt strange and tight. Last night I had tingling and a numb bottom lip and tonight my whole face started to tingle, travelling down from my cheeks to chin, and finishing up with a numb bottom lip. Felt like when I looked in the mirror I would see the sides of my bottom lip pulling down iyswim? Didn't respond to anti-histamine and lasted about 2 hours...Guess i'll be back at the doc's tomorrow :-(

That sounds grim tbh. Are you taking acyclovir for something different and this is a side effect?

Yeah it feels pretty grim if I'm honest!

Okay, to cut a long one short I am on acyclovir for coldsores in my mouth. The strange tongue feeling started about two weeks ago and was just a bit of a 'burned' feeling after eating. At the weekend I started to feel as though a coldsore was about to appear on my lip but it never materialised. I did however notice a few blister type marks inside my top lip which I thought were ulcers coming, but never progressed into ulcers. Went to the docs on Monday and was given acyclovir. That's when these odd feelings started in my face.

The background to this is that ds has food allergies. I have had a terrible diet for the last four or five months, cutting out loads of food not knowing what he was reacting to. I don't eat an evening meal more than twice a week and spend most days just drinking coffee and eating chocolate and crap basically, (I know, I know). Ds wakes 2-hourly at night to feed, so there is a bit of a vicious circle going on of tiredness/not eating/getting run down/feeling worse and so on and so on.

I think (great medical mind that I am ) that the tongue stuff and coldsores is to do with being run down and not getting the right vitamins, os I don't produce the best milk for ds which is why he is waking so much. I got a multi-vitamin today including B12 which I am going to try, and hope that this might help to boost my supply and get ds feeling a little bit more satisfied to hopefully break the cycle a bit. Oh yeah, and start eating actual food...

I didn't want to go into detail about symptoms in my first post so that I could just see what others said and work out if I was being paranoid abuot the effects of the anti-virals or if some facial pain etc was normal. I'm going to stop taking the tablets and go back to the docs. Thanks for helping me to see this isn't normal!

I think all that would kill me tbh! I'm not surprised you're run down.
I know it's a total cliché, but have a good big breakfast - you make better food choices later in the day if you're not in that sugar high/sugar low cycle.

Does caffeine go into breastmilk? Could that be affecting his sleep? (Genuinely don't know btw! Sorry if that's a daft question.)

I dont think it's the caffeine to be honest, I only have two cups a day usually, sometimes three. It's just that I don't really have anything else.

Ds was a great sleeper til he hit the four month regression and its just got worse and worse since then. We have (fingers crossed) got to the bottom of his allergies so I don't think it's anything on that score that's bothering him either. I'm just glad he's my second - I don't think I would have dared have another if I'd had him first!

Was going to suggest a deficiency tbh? I think it's one of the B vitamins that can cause the tongue symptoms? Do you smoke?

No I don't smoke. Someone on another thread said B12. I looked it up and found that it's connected to milk supply so the tongue stuff and ds's frequent wakings would make sense if it was B12. Am going to try the vitamins and see if they help.

Hope they do help. Are you eating a variety of foods? Have you checked with your gp/hv if the vitamins are ok?

oh just saw your diet hasn't been good, that could be it then? Is your ds on formula too?

As mentioned above, diet not great at the moment. Need to make time and find the inclination to eat properly. I think I'm going to go shopping for some healthy ready meals so that I don't have to think about cooking. The vits are a pregnacare mix for pregnancy and breastfeeding so should be ok?

Cross-posted! No formula, breastfeeding alongside weaning.

That's good about vits. Healthy snacks are good to have in, dried apricots etc... not sure if almonds are ok when bf but I swear by them. Plus bananas etc.. such an easy snack. Wheat crackers and some cheese are a quick bite too. Porridge with blueberries, museli, nice bread with high fruit jam all make good breakfasts. It's getting into the habit.

Oh I do miss weaning. I used to love dss faces when they tasted new food I love seeing babies and little ones eat. Can you tell I love food?

Porridge with blueberries sounds delicious, have just had to go and check the cupboard to see if we've got any porridge oats! That's tomorrow's breakfast sorted...

Unfortunately ds has a nut allergy so almonds are out, although ordinarily it would be okay to eat nuts when breastfeeding. Weaning is a bit of a tense business as a consequence, but we have come on leaps and bounds recently. It doesn't help that he likes to make a choking sound just for fun, even if he doesn't have anything in his mouth - I think he's trying to keep me on my toes!

Thanks so much for your advice. Will start making a conscious effort to eat! It's not like I ever needed an excuse in the past

Must be so difficult with a nut allergy hope he'll outgrow it? How old is he? They are funny with their noises and know how to wind us don't they?

You may not want to hear this, but I have suffered from Burning Mouth Syndrome (BMS) for about 10 years. It usually affects women over 50, there appears to be no known cause, and there is no cure as such. You may have already seen this but it gives a good description of BMS.

My problems started when I thought I had a throat infection, and my GP tried me on several different ABs. After the third lot of ABs, I started to get terrible burning in my mouth, and was convinced I had oral cancer. Was referred for tests at hospital, and ENT consultant mentioned BMS, the first I'd heard of it.

It is sometimes related to dental work, and I had had a tooth extracted a month before the throat problem arose (which turned out eventually to be thyroid nodules), and is also associated with excessive doses of ABs, so I ticked both of those boxes. Apparently, it can disappear as suddenly as it started, but I still suffer after 10 years, and have just learned to live with it.

I found that coffee, alcohol and cigarettes aggravate it (and am guilty of all three!) and that although it isn't all that bad first thing in the morning, it gets progressively worse through the day - all typical of BMS. Spicy food with chilli in it will also make it worse, I also get a metallic taste too.

I do hope that you have something entirely different, CasaBevron, as it's a wretched condition, but more common than you would think.

Well I think we have to assume it's lifelong and hope he's one of the lucky ten-ish % that outgrow. At least we don't have to worry about milk, wheat or some of the less easily avoided foods. He's nine months now and turning into a proper wind-up merchant. We're well into the repeatedly-chucking-stuff-on-the-floor-for-mummy-to-pick-up etc etc territory!

Gosh Nan, sounds as though you've had a horrible experience. I'm hoping that my symptoms are down to being run down etc. as I had read that BMS can last for a long time and I don't fit the profile of a typical sufferer. Thanks for the link. Am on my phone just now but will have a look at it when I can get onto the laptop.

Link to BMS on Gransnet - surprising how often dental work is mentioned!

Aww 9 months how lovely I hope he is one of the lucky ones who do outgrow it. My cousin's dd has an epi pen for her nut allergy. Think it's epi pen?

Okay I've looked at the link now Nan. I wouldn't say the pain is chronic by any means, but it does seem to get worse as the day goes on. When I wake up in the morning it has all but disappeared. I feel as though I have burned my tongue on food or eaten something really peppery iyswim? After eating my tongue will feel slightly numb and there is an odd metallic taste in my mouth. Very strange . I certainly haven't had any dental work done recently!

CuriousMama, yes it is epipen . We don't have one (yet?). Ds has never had a reaction, was diagnosed by skin prick testing so we have no idea how he might react. But he's not going anywhere near a nut anytime soon as long as I can help it so I hope we don't have to find out the hard way! It's a real shame as I would have loved to have a third child but I don't dare now, even though dd has no known allergies . I don't think I could cope with any more stress...

Thanks again for your advice ladies. Got a doc's appt this afternoon so will see what she says.